Gilenya in Ireland… or not?

Looking through the window and wondering when and how it all began… Did it creep up on me or did it just hit me with a ton of bricks? Honestly? I think I know when it all started, but then again, there have been past flare-ups or exacerbations long before that, even if I didn’t know what they were at the time. Hindsight is a wonderful thing if you know what to look for.

It does not matter anymore how it all began. Maybe it was fate, but do I really believe in fate or do I just say I do? People often refer to the diagnosis of multiple sclerosis like an unwanted houseguest turning up on their doorstep, an unwanted guest who will be there until their last breath, through the good days and the bad, the rainy days and the sunny days.

Now, I don’t pretend to know it all. Sure… I could be more aware of the ins and outs of MS on a technical level, but I don’t want to over-analyse myself. The only thing I know is yes, it did turn up like an unwanted houseguest. Why, how, when… nah…

I suppose I could live a bit better by managing my stress levels but I love challenging myself so I tend to wind myself up now and then. There are ongoing battles with myself about some of my food choices, but I know I do better on some other things. No smoking, not drinking any alcohol, no party-lifestyle (which I never really had anyway), so I do know what I should and shouldn’t do. I take so many pills I often refer to myself like “a walking pharmaceutical company” or “the tablet-bomb.” So yes, somehow I manage.

There is the odd moment I feel sorry for myself for about 5 minutes when I think “hey, I’m only 38, I shouldn’t be on an invalidity pension at all!” but most days, I just get on with life and laugh as much as I can. After those 5 minutes I slap myself – guilt, I know – for having felt like this when there are definitely worse things in life than having MS.

Having a good support system like friends, families, MS societies, etc. is important if you want to go to bed feeling all jolly about yourself. Having a good medical team is pivotal because you need to know you will be taken seriously when a new symptom pops up or when you need more or better medication. The people you think should be there for you, like governing bodies, you need them behind the scenes because you want them to make the right choices when let’s say, new medication becomes available.

Sometimes I say that my neurologist may know everything about MS on a technical level, but I know what it feels like to have MS. Now however, I have to add: “… and only the HSE knows how to put the dagger on the throats of people with MS” (Health Service Executive in Ireland). I want and have to state, though, that those working for the HSE on the battlefields of A&E wards, busy neurological wards and other staff doing the best they can, my issue with the HSE lies with their executive staff. Yes, those not on the battlefields that are hospitals and other medical services, but those sitting in plush and cosy desk chairs and meeting rooms while deciding on the wages of their soldiers and the lives of the sick people they should support. So please, if you read “HSE”, my issue is with those at the very top of the HSE food chain.

So here I was last year, hoping to be selected for the Gilenya (fingolimod) trial, the first oral drug which is said to work twice as well as the standard interferon/betaferon MS meds. Apparently I wasn’t sick enough to be considered for the trial in Ireland, even though I had told my medical team about my relapses and about my wish to get on the trial because I am simply too young to be on an invalidity pension.

“Na-ah,” the spokesperson of the trial told me, so that was that. Hope deferred. There is always tomorrow I suppose, or the day Gilenya or other new medication would become widely available in Ireland. But while most European countries are now going ahead with the approval and distribution of Gilenya, Ireland, or rather the HSE says “no-go.”

Why? No money in the tills. Well hello?!? The people who do such a non-fantastic job of receiving bonuses while continuously making wrong decisions, they now have a whole bunch of MS patients who are up in arms because of being denied the right on proper health care. We have to wait for the HSE to come to its senses. It’s like denying a cancer patient chemotherapy, the lifeline of their future. Denying MS patients Gilenya (or the next big thing) just about amounts to the same thing.

Needless to say, when the MS Society asked me last week if I would agree on doing an interview with a leading Irish newspaper, I jumped on board (I’ve been told in the past I’m fairly articulate… No way! Really?!? Blushing here!). We, MS patients of Ireland (you can add as much drama as this wording as you like), we demand that the HSE would stop filling their own pockets and would start thinking of how many people they can actually help improve their lives by allowing this new drug.

Philanthropy is a word unknown to the HSE, they’ve already proven their bad track-record in other medical issues and now denying people the right treatment just adds to that. I sincerely suspect them of simply not living in the real world because they show a total lack of understanding about the lives of the people they are supposed to help. Because yes HSE, multiple sclerosis is still a degenerative illness. Yes HSE, people with MS need you when new medication becomes available. Yes HSE, this 38 y/o girl here is too young to be an invalid and too young to spend the next 30+ years not contributing to Irish life and society.

So I did the interview, but I have no high hopes of actually receiving Gilenya. If not me, then maybe someone else who has worse MS than I have will receive the new treatment. Philanthropy I do know about, HSE.

I always try to down-play the role MS has in my life because I don’t want to nag about it all the time or god forbid, lose friends and family over having this unwanted guest. In my heart and in my mind, there is still this little bright yellow light that glimmers, that tells me that someday everything will be OK. Even if Gilenya does not clear all your symptoms, if only I would have fewer relapses, fewer times I have to stay in bed… then HSE, you would make my year. I might even be able to join the workforce again because really, this is no life. It is definitely not the life I ordered for myself. I did not move to Ireland 10 years ago to have my dreams of Hillwalking and travelling cut short. I call it “my life less ordinary” because I am part of this big daydream that keeps me calling back to reality.

So even if the Independent newspaper article of next week does not help me one bit… by god it better help anyone else. Because philanthropy and caring for and about people, that is what makes me, me. Just another girl who’s too young to be held captive by this unwanted, ever increasing nag in the proverbial backside. Just another girl who wants to make something of her life.

In the end, I can’t complain about my life, I am just happy-go-lucky. But I want to live, not just dream about living, but real living. Or is that too much to ask, Health Service Executive?

8 Comments

Gilenya deaths were heart related on first dose only. First dose is given with patient on heart rate monitoring due to known issue with lowering of heart rate. Reviews took place by EMA as far as I can see they have resulted in change in warning information on box only. By the way- the pharmoecenomics group has approved this medication for prescribing but HSE has one yet put it on list. However, traditionally Ireland has been excellent for prescribing drugs which other countries consider too expensive. See professor crown’s comments on radio last week.

I was turned down by my insurance company (in Canada) for the cost of this drug. Since then, I have heard that there have been many deaths attributed to it, so I’m wondering if it’s a good thing they turned me down. Might have done me a favour.

Yes, I’ve heard there were 11 deaths attributed to Gilenya. In hindsight it’s good they turned you down. What annoys me big time though is that the HSE, the governing health department in Ireland, says it has no money for it while they live their life in luxury. Tysabri also has deaths attributed to it but it is available in Ireland. Copaxone isn’t doing anything for me anymore. I need a change so, Gilenya or Tysabri, just anthing else :)

What is this website about?

Quirky, tenacious, and neurologically compromised expat writing about life with multiple sclerosis.

Diagnosed 2,5 years after moving to Ireland, and now living with MS for 10 years, MS is now more than an illness. It's a tool to raise awareness by showing others what life with a chronic neurodegenerative - and therefore progressive - illness is like.

It's often said that knowledge is power, and ignorance is bliss. Things published on my blog might not always be pretty as punch, but it's the unvarnished reality of life with MS. If it helps reduce ignorance, then my goal is achieved.